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It’s felt a very full few days. Sometimes in families there is a time when it seems things are changing quickly. The children outstrip themselves. The adults make plans. Some kind of change is in the air.

We had another clinic appointment yesterday, and despite the week of highs after our holiday, E’s HbA1c is again very good, the lowest yet, well under 7%. Just how lucky we are in this achievement was brought home to us when we both heard another teen’s HbA1c, same day, same clinic: 12%.

Living with diabetes requires an incredible vigilance, and, as the consultant pointed out yesterday, gaining control requires a kind of obsessive nature, a perfectionist bent. How true for E.

Growing with diabetes, growing up with it, requires quite a different set of coping mechanisms. And some are winners in it, and some have Herculean sized struggles with it. This is the hormone story: insulin (a hormone), brings blood sugar down. Cortisol and adrenaline — both typically sky high in adolescents, and especially in driven adolescents (check) — raise blood sugar. Unpredictably. Of course.

Growth hormone, as I’ve mentioned before, also raises blood sugar. And is only secreted at night. What I did not know is that it is secreted at all different times of night, in response to the body using up the glucose present in the blood. As the blood sugar drops, growth hormone has the chance to kick in. So it is secreted in a pulsating type pattern. Unpredictably. Which is why over the last six months we have had these astonishing runs of highs in the night, and then just when we want to do something about it, boom, they stop. We have been completely unable to predict or grab them.

The consultant’s advice for these adolescent highs was very good: correct the random highs (perhaps caused by cortisol and adrenaline) as you find them. Don’t worry overly about the growth hormone highs in the middle of the night, because some of the effect may well settle and drift off by morning. So try to get the morning reading okay, but stress less about the night time one.

He also confirmed that E had grown over an inch since June, and another inch in the preceding three months. So we all had a bit of a celebration and a sigh: we are in the middle of his main growth spurt, which may  last another year. Hold on for the ride.

It is clear that E and we seem to have the mentality to constantly ‘be after’ diabetes and control without it wrecking our lives. He tests as a matter of course, without protest, and is keen to keep in range if at all possible. His most upset times come when he runs high — not just because he feels bad, but because he is hugely, hugely aware of how bad this is for him.

In that way and so many others, we are lucky. We are able to carry all this, to hold it, without it taking an incapacitating toll on us.

But how easy it is to imagine a family, many families, where people just aren’t put together like us. Their lives are not as settled, not as happy in other ways. They’ve not had the support of a good diabetes team in the early years. The child or teen just wants to pretend it’s not happening. And the numbers spiral up, kept just within the need the hospitalisation.

I’m not saying anything that almost all of you know, and may even be experiencing. It does make me desperate though, desperate for help with this: how can all families be expected to essentially cope on their own? How can every person be expected to understand and be motivated to look after themselves? They can’t and UNDERSTANDABLY SO. It’s dire. But the price is so high.

E was speechless when he realised that the teen across from him had an HbA1c which was almost twice as high as his. I could see a helplessness mounting in him. How does this happen? We both felt chastened, and left feeling quite humbled. And for me, a little heartbroken too.

***

A little kitten vid. Cleo calling and playing with them. After a while she realises one is still in the box. Hmm… goes to check it out, and they all (eventually) follow… Our bundles of good and silly stuff amongst all the sobering thoughts…

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Well, things have warmed up here in the SE of Britain — even the rain is warm now — and with my hut days finished (sniff! pictures to follow) — my attention is turning to a) getting another hut; b) the garden and c) external examining, planning for next year, my own exam boards and and and…

Guess which one of the above actually takes up the most time? Yes, it’s the last one (Eeyore-ishly said).

ANYWAY. I’m mainly on here today to say that much as I adore my fast-growing beanpole of a son — who since Christmas must have grown three inches and now stands substantially taller than me and taller than his grandfather and not a million miles away from his *father* — we feel locked in a bit of a battle with it.

Herewith: went to clinic on Friday and the ol’ HbA1c (complicated averaging of blood sugar levels over three months) is the highest since diagnosis, and outside of high ‘normal’ for the first time too, eg over 7mmols. Damn. And other, much ruder, words.

We think we know some reasons for this:

1) all the fuss with the sets messing up. We had some stupendous, recurring highs with those problems, and knew that this alone would affect this HbA1c. (The new Silhouette sets, I am pleased to report, are still MUCH better, despite having been yanked out again by accident — ouch — in a game of football at the weekend. We were all no doubt suffering from sunstroke, because in that sort of running around he should have had it off anyway, but oh well! Soon replaced, bravely.)

2) growth hormones. Bane of everyone’s existence blood sugar-wise, except that of course growing is good. Very good. But after a couple of weeks of high mornings, then suddenly we had another week of low mornings, then you guessed it, another week now of high mornings. Bit disastrous. We just begin to think we need to change the basal rate from 12am-3am, and bingo! The trend has reversed. This is probably almost exclusively down to growth hormones. And probably too indicates that in the night all kinds of highs are happening about which we have very little awareness. This is disheartening in itself, as we are trying so hard. But we suspect that this is at the root of his higher HbA1c. We simply aren’t catching the night highs well enough.

3) Being slightly more laid back about numbers. This is a good thing, again. Healthy and to be desired. But perhaps we have let a little too much slide? The increments of vigilance are just so tiny, yet seem to make such a difference. Damn. We are NEVER complacent. But taking our feet off the gas is something we have done a little… But maybe we have allowed the car to slow just too much in this 50 mph zone…. Argh. You get caught by the camera whether speeding OR going too slow….

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So I won’t pretend we aren’t a little bummed from this recent number. The doc however says it’s still WAY better than most adolescents manage to achieve. Be that as it may, we are used to better.

So, again. What are we doing about it?

1) Last night we went ahead and raised the basal for a couple of hours. He had a steady night on 6mmols.

2) We are trusting that the new sets (with their clear stability) will impact the next measurement.

3) E is expressing a clear desire to try a CGM(Continuous Glucose Monitor). This device measures the blood sugar level via the tissue rather than a pinprick, and is in situ for 7 days at a time. It is not entirely accurate, and you cannot dose insulin or take any real action on the basis of what it reports to the pump…However, you *can* ascertain trends in blood sugar, which will be enormously useful to us in a time where we are suspecting that we are missing highs. It is extremely good for discovering patterns, and we are extremely fortunate to be funded for it in our area. This, we hope, will help, even in this seemingly pattern-less time of adolescence!

It is to E’s credit that he now is firmly for trying CGM. It involves another ‘thing’ in him at all times, and another 45 degree insertion, which is what put him off it entirely initially. Now that he is used to the other sets, he is stepping up his game, and can face it. This is his decision.

Once again, I am proud of him. We are proud of him.

Chasing all this all the time is a true pain. And incredibly inconvenient in his life. His sights are set though. He knows he wants good numbers. And we will do everything we can to help him get them for as much of the time as seems sensible and realistic — and not obsessive.

So in two weeks we will attend our other clinic, at our shared-care hospital, to learn how to do the CGM insertion and set up the sensors. Deep breath.

Setting sail

In November 2008 my 12 year old son was diagnosed with type 1 diabetes. The effect of this event on me -- and on our nuclear family -- was like being thrown overboard and watching the ship leave.

'Dealing with type 1' in the family has morphed into another sort of 'dealing' -- a wholesale resituating of parenting, of family dynamics...of life.

At my son's diagnosis I could not to locate a record of what living with a type 1 child in the family is like. I could not see myself or our family anywhere. I longed for a starting point, a resource and a sense of the future. Being a writer, my instinct is to write it. This space, I hope, is a start.

Blood Sugar Ranges (UK)

<4 mmols = low or hypo, life-threatening if untreated
4-8 mmols = within target range
8-13 mmols = high but not usually dangerous
14+ mmols = very high, or hyper, life-threatening if untreated

Bubbles

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Disclaimer

I am not a medical professional. Any view expressed here is my opinion, gleaned from experience, anecdote or available research.